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Navigating uncharted waters with feelings of isolation, exhaustion, and struggles to form new identities within relationships, but holding on to hope. Finding grace and dignity in the midst of the diagnosis and beyond, addressing marriage challenges, sibling connections, caregiver care, and life beyond the diagnosis.
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Finding Balance After the Diagnosis The Journey back to Grace and Dignity
How life has changed • We are navigating unchartered waters with feelings of isolation. • We are emotionally, physically, and spiritually EXHAUSTED! • We are struggling to form new identities within our marriage and other relationships. • WE hold on to HOPE!
Finding Grace and Dignity in the midst of the diagnosis and beyond • Identify the changes and challenges we see now and those to come . . . Marriage Challenges that follow the grief cycle. Sibling connections between your children. Care for the caregiver
Life beyond the diagnosis. Focus on all members of the family. Letting Go of what holds us back. RECOVERY!
What may lay ahead After a HOPE filled conference like Autism One, parents find a renewed sense of focus as they hear about children recovering from autism. They become determined to have their child one of the RECOVERY statistics, and return to a “normal” life, however it is redefined.
REALITY • HOPE is real. • Children are recovering. • Your child can be one of them. • The effort will be worth it. • Life as you know it will be forever changed, and most of it for the good. • RECOVERY is a journey, not just a destination. And all members of the family will be a part of it.
How Autism Impacts Marriage • The Six Stages of Grief/Acceptance after the diagnosis – based on the Elisabeth Kubler-Ross Model of grief stages after death. • Fear • Anger • Denial • Bargaining/Guilt • Acceptance • Resolve to Overcome
FEAR – the first stage of the grief cycle after the diagnosis • Fear of the unknown. • Fear to make a decision. • Fear for your child’s future. • Fear of the impact on the family. • Fear of what others will think (yes, this is real). • Fear of how the parent will cope.
ANGER – the second stage of the grief cycle • Anger at the circumstances. • Anger at the medical community. • Anger at educators. • Anger at your spouse. • Anger at insensitive family and friends. • Anger at yourself. • Anger at your child (this one is tough to accept).
Denial – the third stage of the grief cycle • Denial of the diagnosis. • Denial of the impact on the family. • Denial of steps that need to be taken to help your child. • Denial of the spouse’s concerns. • Denial of the panic that the parent now feels.
Bargaining/Guilt – the fourth stage of the grief cycle • Measuring how much effort a parent will put forth to help toward the child’s recovery. • Guilt over what the parent believes they should or could have been doing to help toward their child’s recovery. • “I’ll do this, but not that.” or “I should be doing this but I can’t right now.”
Acceptance – the fifth stage of the grief cycle • Acceptance of the diagnosis. • Acceptance of the parents role in their child’s recovery. • Acceptance of the changes to the family. • Acceptance of the changing roles of the couple. • Acceptance of the current circumstances.
RESOLVE to overcome – the final stage of the grief cycle • Resolve to help the child recover and/or improve. • Resolve to carve “normal” into the day. • Resolve to form a new bond with the spouse. • Resolve to focus on all members of the family. • Resolve to find balance again.
Going through the cycles • Each person goes through the cycles at different times and in different ways. • The stress in the marriage happens when one spouse is stuck in one stage while the other has moved on toward Resolve to Overcome. This leaves each spouse feeling alone in their effort, neglected and uncertain of the future.
What to do to move through the cycles quicker in order to focus on the child’s recovery and to dispel conflict sooner. • Acknowledge the other person’s pain and need to grieve. • Develop a method to help each other move through the stages of grief, with support from the other. • Talk about your feelings and concerns during a quiet moment.
Moving through the stages • When possible GO ON A DATE!! • Speak to each other respectfully. • Don’t allow yourself to be a martyr. • It’s okay to say NO! • Give each other breathing room. • Expect bad days. • Meditate and Pray.
LET’S TALK SEX • What works best to move through the stages quicker? SEX • The previous 10 points were to make for sure both partners are ready for great sex. • Why it works! • Anecdotes of couples who worked through the six stages.
Not going to happen you say? • Anxiety • Fatigue from caring for a child with autism. • Not sleeping in the same room. • Anger at spouse. Fall back on previous ten points, but allow room for intimacy to come back into your lives.
Other Family Members • Connection with your “typical” children. • Connection with your child with autism. • Connections formed between the children and the identity they create together. • Allow for the “typical” child to grieve too. • Don’t force a relationship between the siblings. • Creating balance on the schedule and time.
Care for the Caregiver • My story. . .don’t let this happen to you! • The high price of tunnel vision. • How stress impacts the body. • Finding balance for the health of the caregiver is just as vital as the efforts for the child with autism.
Letting Go does not mean giving up • Letting go of anger. • Letting go of fear. • Letting go of expectations: your own and those of others. • Letting go of GUILT!! • Letting go of anything that denies you grace and dignity.
What does letting go look like? • Not rising to the occasion to argue when it can be avoided. • Not worrying about what others think or say. • Saying NO becomes easier. • You are not afraid to reach out for help. • Not seeking to CONTROL all that is around you. • A greater sense of PEACE in life. . .not Pieces of life.
Steps to visualize reclaiming grace and dignity back into your life. • Are you holding on to FEAR? The future? The unknown? Making a decision? Your child’s health? Are you paralyzed by this FEAR and not moving forward? Not making decisions? Lashing out at others? What does moving forward feel and look like?
Are you holding on to ANGER? • Anger at your spouse? • Anger at the school district? • Anger at other family members? • Anger at the autism diet regimen? • Anger at what caused your child’s autism in the first place? • Are you paralyzed or energized by this ANGER? Are you moving forward or stagnant?
Are you holding on to GUILT? • Does a bad day with your child cause you to feel guilty? • Do you feel guilt that you may have “done something” that caused your child’s autism? • Do you feel guilty that you may not be doing enough, or doing too much for your child with autism? • Do you feel guilt that you may not be paying enough attention to your other children? • Do you feel guilt that you may not be doing enough to help your spouse? • Are you paralyzed by this guilt and wallowing in the mantra of “I should be. . .”?
Are you sabotaging your own health in the effort to help your child? • Do you eat too little or too much? • Do you take supplements? • Do you get adequate rest? • Do you take time for exercise? • Do you take time away for just yourself? • Do you meditate or pray? • Do you ask for help when needed?
“It serves little purpose to heal the body, if in the process you destroy the soul.” • Meditation to remove the anxiety, fear, doubt and guilt. • Meditation to encourage inner wisdom to replace the anxiety, fear, doubt and guilt.
The value of remembering to breathe! • Releasing the anxiety, fear, doubt and guilt will encourage the very act of breathing correctly. • Breathing correctly will all work to ensure the body’s reaction is mitigated when faced with anxiety, fear, doubt and guilt.
HINDSIGHT Daniel recovered by the age of four. It took me just as long to regain my health and well-being, as well as to find an identity outside of autism. Looking back it didn’t need to be so difficult. Looking forward it is time to reach the next generation of parents.
Reclaiming grace and dignity! Carve NORMAL into your day – it will instill the need for balance. Acknowledge the need to go through the grief process – it will allow for grace and dignity to enter even in the worst of times. Seek spiritual connections, even if you are not religious – you may feel grace under pressure, dignity in the mundane and a new sense of balance to life expectations. Seek intimacy with your spouse. It encompasses GRACE and DIGNITY! Go EASY on yourself!
Mary Romaniec • MRomaniec@aol.com • www.maryromaniec.com
